Wednesday, 11 January 2012

Health update and benefits #spartacusreport

I went back to the consultant yesterday, 6 months ago he told me there was no more they could do for me as I had worked my way through all the available medications over the years and not one had suited me. I wasn't hopeful that anything had changed in the past 6 months so just saw yesterday's visit as a check up really and that was pretty much what it was. The consultant had a student with her, a nice young fella with a pleasant attitude and an enquiring mind, he had been reading my file before I went in, I certainly didn't envy him that as its so large now it resembles a best seller! The consultant was very thorough with her examination and I got the distinct impression this was more for the students benefit than mine as she kept talking over me 'see the lack of movement here? That suggests this lady is also developing ??' I can't pronounce what she said let alone attempt to spell it but as she was playing about with my ankles at the time I take it the complication is there! She was doing some kind of point scoring graph and at the end of it informed me that my joints were 90% affected by the Psoriatic arthritis now and progression was quicker than they had hoped it would be. The consultant took my graph etc to show 'the top dog' and the student took the opportunity to ask me some questions of his own. His first question was one I often get asked 'how do you cope?' I think he was particularly interested in the fact that my hands are now badly affected and my left hand is useless and the right is only marginally better. He said he could understand how I may still be able to cope with the mobility side of the illness but how do you manage without the full use of your hands? I think sometimes people expect me to be a lot sadder,angrier,stressed or helpless than I am but as I pointed out to him there's no point in feeling that way, what would that solve? You grieve for the loss of use of parts of your body for a while, you cry for what you can no longer do, then you pick yourself up and you find other ways of doing things or other things that you can still do to replace the things you can't. When the consultant returned she started asking about my health in general, as those of you with long term medical conditions will know it becomes almost impossible to tell what symptoms are down to that and what may be something else so I mentioned the recent headaches, eyes blurring etc. After further examination it appears i may have temporal arthritis, this apparently isn't that uncommon in these auto immune diseases, this discovery led to blood,pressure being taken and yes that was raised also so trip to GP sooner rather than later to discuss pain Meds and get BP checked out again. There are still no new Meds available so same old story, rest as much as possible to try to not overwork joints that do still work? Pain management and back in 6 months, oh and a steroid injection as I did get 2 weeks relief from the last one of those I had. This brings me to the situation with the benefits, stress plays an important part in this disease so I have to try very hard not to let things get on top of me, how though am I supposed to ignore what this government are doing to our welfare state? It's not personal I have been told, don't take it personally but of course it is personal. When the media call disabled people scroungers.......that's me! When the government stop ESA after a year.....that's me? When they have lied about the fraud rate......that's me! When they are changing DLA to PIP, a benefit that is going to be nigh on impossible to get even with my well documented health problems.....that's me! I could go on pointing out the wrong that this government are doing to the sick and disabled in this country but the link below will explain it far better and easier than I can so please take a moment to have a look. Spartacus report ........ - Posted using BlogPress from my iPad

1 comment:

feline9 said...

What can I say, it's a bugger, you are helpless, at the mercy of the doctors and their ability to come up with ideas of how to make your pain as bearable as possible; at the mercy of the government and their assessments of your abilities (or lack thereof!)And they wander why we get depressed with the constant struggle in simply living from day to day - of having any quality of life along the way. Bugger!!